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Archive for November, 2012

We are so excited to announce the launch of our new Sharing Hub – Multiple Myeloma and Your Bones – and share new content with everyone in the Multiple Myeloma Online Community.

These shareable videos feature inspiring Health Activists Jack Aiello, Lori Puente of Riding the Wave – Multiple Myeloma, and Linda Baker of Walking with BigEZoffer topics that will interest patients and Health Activists alike. We know education is a key step toward empowerment so in addition to Lori, Jack and Linda, Dr Suzanne Lentzsch, M.D., Ph.D. Associate Professor of Clinical Medicine and Director of the Multiple Myeloma and Amyloidosis Program at Columbia University Medical Center will discuss information on a treatment option.The videos provide an inside look at bone lesions and a Q&A section led by Lori, Jack, and Linda.

It’s WEGO Health Activist Awards season! Let’s celebrate the amazing things that members of the online health community did in 2012. Here at WEGO Health, we’ll be sharing our favorite parts of Health Activism now til the end of the year – and we hope you’ll join us. A great (and easy) way to say “thanks” and recognize the hard work of an advocate you know is by nominating them for an award!

Best in Show Awards 2012

Best in Show: Blog 2012

Whose blog do you absolutely love? Their writing is exceptional, their “voice” admirable, and their writing is just really worth reading. You think anyone wondering why patients or caregivers would blog about health should read this Health Activist’s blog – it will make the case crystal clear. They have great info, raise awareness, and do whatever they can to help their community by using their blog. They may be active on numerous social platforms – but the blog is their bread and butter – and they are a great model of how to be a blogger.

Who has created an amazing online community or threaded forum that houses important conversations about health? Through their site or online space, they bring people together. Their leadership takes the form of active community management, engagement, and moderation. They’ve mastered the art of creating an inviting space for newcomers while still keeping a safe space that people have come to respect and rely on. This is a community or forum you’d recommend to new patients and family members or friends because it has it all.

Facebook is a community all of its own. Over the past few years it has transformed from a place for a personal profile to a real hub for discourse, conversation, and community. Who has the best Facebook Group or Page of anyone you know? They have balanced the tricky interface of Facebook and turned it into an opportunity to reach more people in a medium people are used to. They foster an environment that people want to “Like” and have a ton of interaction there every day. The leader of the group may have other sites – but he or she really exemplifies why Facebook can be used for good.

It’s not easy to doing amazing things in only 140 characters – but there are some people who truly excel at it. There are Health Activists who have connected with others and raised awareness just by tweeting – let’s celebrate them with an award! Whether they’ve created their own Twitter chat or participate actively in others’ chats – they are the model of Twitter for health.

Some people have combined a bit off offline and online by taking their activism to video! These brave advocates star in videos as a way to connect with fellow patients and caregivers and they are great at it. You feel connected to them and to the cause just because their videos are so engaging. Nominate someone who is a video rock star and you think should be recognized for their contribution to

Be sure to visit the Best in Show: Video – Pinterest Boardto see some of the folks who are already nominated! We’ll continue to tweet, Facebook, and email nominees throughout the next month.

This is a brand new award for 2012 because every day more awesome advocates are utilizing videos to make a difference!

Remember: you can nominate as many people as you like! We will be taking nominations until December 31, 2012. Then, after nominations are closed, the judging panel will begin reviewing finalists and selecting winners throughout the month of January. Read more about the process on our Awards FAQ page.

It’s WEGO Health Activist Awards season! Let’s celebrate the amazing things that members of the online health community did in 2012. Here at WEGO Health, we’ll be sharing our favorite parts of Health Activism now til the end of the year – and we hope you’ll join us. A great (and easy) way to say “thanks” and recognize the hard work of an advocate you know is by nominating them for an award!

Best Ensemble Cast 2012

There are Health Activists who work seamlessly alongside other advocates and make a great team. Together, they may lead organizations, co-write blogs, plan events, or run communities — but no matter what they do, they are really helping others. This ensemble has wide-reaching impact on the health community they lead and are making a difference. They may be two people or two thousand people – but they are worth awarding as a whole united group of advocates.

Be sure to visit the Best Ensemble Cast on Pinterestto see some of the folks who are already nominated! We’ll continue to tweet, Facebook, and email nominees throughout the next month.

This award is brand new to 2012 and came from the idea that sometimes you can’t choose just one person to nominate when a whole team of folks are doing their part.

Remember: you can nominate as many people as you like! We will be taking nominations until December 31, 2012. Then, after nominations are closed, the judging panel will begin reviewing finalists and selecting winners throughout the month of January. Read more about the process on ourAwards FAQ page.

Conversations about alternative treatments and natural remedies come up occasionally in our community – but likely occur more often in your individual health communities. When it comes to feeling better – just about anything seems worth trying. But, as we know, miracle cures are easily peddled online – with little to no vetting – and this can be a real problem. How do you know what to trust? How do you know which practices are really worth integrating into your daily regimens and how can we work together across conditions to raise awareness about the positive effects that alternative and natural medicine and treatments?

Join us at 3pm (ET) today to discuss and listen along to a panel featuring Health Activists who dedicate their time to advocating for alternative and natural remedies. It should be a fascinating conversation! We hope you’ll join us. Tweet along here: http://tweetchat.com/room/HAchat

It’s WEGO Health Activist Awards season! Let’s celebrate the amazing things that members of the online health community did in 2012. Here at WEGO Health, we’ll be sharing our favorite parts of Health Activism now til the end of the year – and we hope you’ll join us. A great (and easy) way to say “thanks” and recognize the hard work of an advocate you know is by nominating them for an award!

Advocating for Another 2012

There lots of reasons why Health Activists get involved in advocacy – but this particular group of advocates have a special inspiration: their loved one. Though these advocates may not personally experience a chronic health condition, they tirelessly raise awareness and have an up-close-and-personal perspective that is invaluable. They are caregivers: children of, siblings of, parents of, significant others of, or friends of patients – who work hard to make the world better for patients like their loved one. Not only do they dedicate their time caring for someone in-person, they also support others in the online health community through their blogs, sites, and social media presences. They truly prove that caregivers and parents need to be at the table alongside patients when it comes to changing healthcare for the better.

Remember: you can nominate as many people as you like! We will be taking nominations until December 31, 2012. Then, after nominations are closed, the judging panel will begin reviewing finalists and selecting winners throughout the month of January. Read more about the process on our Awards FAQ page.

As the year comes to a close – the holiday season is here! Now is the time for to see those we love, exchange gifts and goodies, and create memories. It’s also a great time to reflect on the year, our accomplishments, and how we can help and support others.

This weekend starts the official gift-buying portion of the season. But alongside Black Friday, Small Business Saturday, Cyber Monday is a day of gifting that has a heart-warming addition: Charity Sunday. This Sunday, November 25th, is a day when holiday shoppers can put their spending to good use by supporting charities, non profits, and causes. It’s an opportunity to open your wallet and your heart to purchase gifts in a way that will also help others. The intent behind Charity Sunday is to highlight good causes that offer items that people can purchase to support a great cause. And, by buying an item from these causes – you’ll be donating right to the cause and other fundraisers that will really make a difference. You can also give a donation in your name or a loved one’s name. Not only will you be finding a unique gift – you will also be giving back. It’s definitely a give/give and win/win situation – and one that will last long past Christmas morning.

One great example of a community participating in Charity Sunday is The Great Bowel Movement – Awareness for Crohn’s & Colitis. TGBM is participating in Charity Sunday, by offering 10% off your purchase with the code “CHARITY”, not just on Sunday but the whole shopping weekend! Use this code on our online store from Friday, November 23rd through Monday, November 26th. So you can buy something from their “products that inspire” store and give back. Pretty awesome, right? We thought so too.

You can also help support the event by sharing Charity Sunday with your friends, families, and followers. You can feel free to use this Facebook cover (Thanks to Megan Starshak for sharing with us!) to promote your own Charity Sunday event. You can use this image on your Facebook Timeline, Twitter, or Tumblr with this image that shows you’re supporting the cause.

Are you participating in Charity Sunday? We’d love to hear how you are getting involved! Comment here, share a note on our Facebook page, or tweet us @wegohealth – and we’ll help you share the Charity Sunday love.

Trials & Tribulations of Being Type 1 Diabetic

“I have several complications from diabetes. I write about my health because I struggled for a long time trying to figure out how to manage blood sugar while dealing with gastroparesis. I wanted to be able to share the things that I have learned with others. Although there are a lot of bloggers writing about diabetes, not very many of us are writing about our struggles with complications.”

Caregiving Cafe Blog

“I blog about caregivers taking care of themselves on every level: physically, emotionally, spiritually and mentally. The work that we do is so important, as caregivers are literally the lifeline for so many chronically ill, disabled or fragile seniors. Caregivers experience joys and trials as they provide compassionate care for their loved ones. Often, they are also raising a family and working. They deserve recognition and support from family, friends and community.My blog is unique because I provide links, resources, information and support that come from organizations involved in caregiving, wellness or healthcare. I also present a caregiver’s honest perspective. I provide an inside look into caregiving and encourage caregivers to reach out for assistance in order to avoid becoming patients themselves. Reach out, don’t burnout!”

Conquer In Spite Of

“When I first got Lupus, I was very lonely. And the few blogs I could find on the topic didn’t feel relevant to what I was going through. Conquer In Spite Of is a unique Lupus blog because I try to keep a positive attitude and I try not to let myself get into that “tragedy” mindset. I try to share the hope and the happiness and I try to find ways to relieve symptoms and live healthy and happy.”

My Brain Lesion and Me

“I blog about my health condition, as neurological conditions are often very misunderstood as is invisible illnesses in general. So I feel it is important to raise awareness of conditions such as these and the effects that it can have. My blog is unique as my condition is unique!! Not many people have the condition and the symptoms are not understood and so the blog raises awareness and also aims to educate the wider public.”

Last Friday we talked about ADD and ADHD with leaders in the community who had a ton to say about awareness, stigma, treatment, and what it’s like to find yourself in such a misunderstood (and often-shamed) condition that affects each person differently. –Amanda

Roundtable Recap: ADHD

Here at WEGO Health decided to learn a little more about a disorder that affects many but few know all the facts about. We love to enlighten the community and bring awareness and information to people who may be able to utilize this information to help themselves or others in their community. In Friday’s roundtable we focused on ADHD. We found several amazing men and women who are also trying to educate others about ADHD, John (@johnseverino), Dr. Stern (@ADHDFamily), Bonnie (@ThrivewithADD), and Jeff (@AttnTalkRadio). These four remarkable people shared their stories and plenty of helpful tips about recognizing the disorder, advocating for yourself and others, and facts about ADHD.

Being an ADHD Health Activist is no easy task. So how did you get involved in advocating?

Dr. Stern: Well I got involved because I became a little disenfranchised with the medical community and their lack of support for the children. Another part of my activism comes from being a misunderstood kid. I grew up in a time where ADHD wasn’t really talked about the only people diagnosed were children with behavioral problems and that wasn’t me so I sort of fell through the cracks… We have to stop with these labels and find out what these adults and children really need to survive.

Bonnie: Well,I got involved by being diagnosed with it rather accidentally. I had a friend who was in trouble and ADHD and I said I would help them. I then went to a conference to find out how to help my friend and to my intense surprise I read myself in the handout. So I signed up with an 11 month training program and that’s how my whole career turned around and I became and ADD Coach.

Jeff: I got into coaching kind of upside down. I was in the corporate work and the insurance world. Then I decided to be Mr. Mom for about 9 months when my wife came home and said you should try this coaching thing. A friend of mine said I should try coaching adults because of my dyslexia and learning disability and how I struggled with that. So I started this podcast to get my foot into social media and it really turned out to be a large thing because so many people aren’t aware of ADHD coaching. So this show is about getting the word out about ADHD, educating the public, and bring awareness and support to ADHD.

What are some of the challenges asscociated with advocating for ADHD?

Dr. Stern: The most challenging aspect in a parenting world is the feeling that parents go through when they think “I’m alone in this,” because unfortunately there is so much shame associated with ADHD. That then umbrellas to “am I a bad parent?”, “what did I do wrong?”, “‘normal’ kids don’t go through this.” There is an idea that a kid with ADHD is broken and we can just “fix” them which is absurd.

Bonnie: Often the shame leading to avoidance is leading to a bigger problem than the ADHD itself. The thought “I don’t dare to ask for direction because then people will know I didn’t do it right the first time” is so damaging.

Jeff: One of the most challenging aspects is trying to get people to relax and notice who they are. Having ADHD is like being born left handed in a right handed world. Everyone is trying to give you a right handed solution. Once you start realizing that you’re reaching for the door with the left hand and that’s okay, it gets them to relax and realize that this isn’t so bad.

The online community is a great way to connect with others that share your interest in Health Activism as well as remind you that you are not alone on your journey.

How has social media and the online community changed your personal health journey?

John: Well I started a Facebook page to go with my website and I didn’t think I would get that many hits. Now I have over 1500 fans and it’s been great because we’ve been able to have open conversations that I don’t think people would normally have an opportunity to look at.

Dr. Stern: With social media information now comes into your house. So even if you live out in nowhere, if have internet you can access quality care and connect with people in all different ways. Facebook has been life altering for me and my work. We’ve removed the “I’m alone” feeling. You have this social proof of people going through the same thing.

Bonnie: Well the online platform, and in my case it is primarily a blog, it definitely helps you communicate in the moment. If there is, say, a client of mine that reached an epiphany, I can put it anonymously on my blog and there is a way for other people to comment on it. However, I think many people are concerned over the possible stigma because it’s been out in the news a lot about potential employers going to Facebook and looking you up. So as long as it’s out there people can access it and they are going to be concerned about the stigma or personal prejudice of ADHD.

Jeff: With social media, people are usually very quick to give top 10 obvious solutions to something and that isn’t always the case for everyone. To me there should be more conversations about how you’re different and how your condition is unique. People always look for the quick solution and when they don’t find that they get frustrated. People come to me and I help them realize that they are different and not every solution will work for every person.

With a condition that is so common, but so different for each person, there are lots of options out there for treatment or management. What do you advocate for? Do you discuss different types of treatment and management for ADHD?

John: It’s very interesting how you have two groups: the holistic approach and the not holistic approach. I think things that have been tested and can see statistics on are helpful. However, I don’t necessarily discourage the holistic approach. It becomes almost a bipolar relationship—you have the holistic and not holistic way that causes some fireworks.

Dr. Stern:For me there’s the issue of medication and not medication. As for working with children there is nothing more controversial. About 90% of parents say they do not want to give their kid medication. However, so many people are looking for a quick fix. Medication can do that but it can also cover up the symptoms. There is no concrete treatment that helps so there is a divided medical community.

Bonnie: I think people are looking for what brand works. So they’ll drive the discussions online to “what are you using?” They are having trouble figuring out that everyone is different and each brand will be different.

Jeff: It’s interesting because almost every show is related to this. I’ve found there are five key categories 1. Get the right diagnosis. 2. Education. 3. Things that affect the physical brain—medication, fish oils, diets, proteins, etc. 4. Coaching and behavior therapy (which is really difficult because when you get inside of everyone’s head we don’t know what each other are paying attention to), and 5. Neuroplasticity. To me most of the discussions fall into these buckets.

Raising awareness is one of the most important parts of advocating. What would you want Health Activists in other health communities to know about ADHD?

John: I just think that education becomes so important because there are so many facets to how ADHD permeates our lives. The medications help but they aren’t magic—you still have to relearn behavior. So, I think education is key and to get them away from that quick fix.

Dr. Stern: I would encourage people to lead with compassion. In my experience with adults and children, people with ADHD tend to face so much criticism, so much doubt, so much negativity. They’re looking for compassion and validation and we need to support them. We need to let them know that things are going to be okay and then ultimately put them on the path that shows them how to be okay. People are just looking for support.

Jeff: The one thing about ADHD is that you can have an impact you can change people lives. It is the most fun and the most thrilling thing to work with someone with ADHD. You can have such a positive impact on their lives.

It’s Fitness Friday and we have a new interview with Coach Nicole of Acacia . Nicole and her team focus on helping their community live healthy, joyful lives.

1. Tell us how you became a fitness advocate and why it’s important to you?

I have been an advocate for fitness and health most of my life! Healthy living is one of my passions and I believe that health is the real key to lifelong happiness. It helps you live longer, stay independent, and enjoy life’s greatest pleasures and experiences. When you have good health and fitness, you hold the key to a happy life. That’s why I care so much about helping others achieve better health and improved fitness.

2. What role does fitness/nutrition/healthy living play for those dealing with chronic illnesses or serious diseases?

These healthy habits play a significant role in everyone person’s life, not only in the prevention of many chronic illnesses but in the management of them as well. A healthy diet impacts your body, your joints, your brain, your mood and energy levels, which we all need to be in tip-top shape if we’re going to continue staying as healthy as possible especially when facing challenges like chronic disease. And we know it can play a huge role in disease management for all of these reasons. Exercise is no less important. It can also provide a mental benefit (both in coping with the challenges of a chronic disease and prevention of related depression) and a physical one, too.

3. What advice/tips do you have for those interested in living a healthier lifestyle or getting back on the fitness bandwagon?

Don’t wait. Start now. If you care about your health and you have the desire to do something about it, there is no perfect time to get started. If you are waiting for work to calm down or life to be less stressful to take on these lifestyle changes, you’ll be waiting forever.

Start small. Every little bit does make a difference. You don’t have to work out for an hour a day or eat perfectly 100% of the time in order to see positive changes. Do what you can right now and think about “adding on” later.

Set a goal. Make sure it’s SMART (specific, measurable, action-oriented, realistic and time-specific). If it has all of those elements, you’re well on your way to making it happen.

Ask for help. Everyone needs supportive people in their lives especially when taking on new challenges that can be difficult, new or unchartered territory. Reach out and tell people about your goals and accept advice and help where you can get it.

Avoid the gimmicks. When it comes down to it, the tried and true advice you can really trust is quite simple: eat whole foods (less processed stuff) and move more. You don’t need special gizmos or diet plans in order to be successful and reach your goals.

Put “motivation” on your to-do list. Motivation is something that requires regular attention or else you’ll quickly lose it. You have to find words, images, stories and ideas that motivate you on a regular basis. The only way to keep you motivation is to “train” it—much like a muscle! Try to do something to focus on your personal motivation for your goals each day.

4. What keeps you going when exercise/fitness is unappealing?

I don’t find exercise to be unappealing. I find it to be liberating! To me, exercise isn’t an “optional” part of my life. There are a few things we all make sure we do regularly. We eat three meals (hopefully!), we sleep, we brush our teeth, we drink water to stay hydrated. We go to work or care for others. Exercise is a non-negotiable on my list of daily tasks, and that is what keeps me coming back to it. When you believe and remember that exercise makes your life better in a multitude of ways, it’s easy to stick with it. It makes you free and able to enjoy your life better. But it IS important to find things you enjoy. I am not an advocate of painful or punishing workouts; rather, each individual should find workouts or active pursuits that they look forward to doing and that feel good for them. That is the only way you’ll truly stick with it.

Crohnological Order

“I try to express how I live with Crohn’s Disease using humour and light hearted stories. I want people who already suffer, are new to the disease or have a loved one who suffers, to know there is light at the end of the colon! “

Free Falling… Young Crohn’s

Sunshine & Chaos

“I have an inner ear disorder with disequilibrium each day. The ENT doesn’t know specifically what the cause is and can’t give a specific diagnosis. This difficulty is what led me to start blogging. It has helped me to “meet” others in a similar situation as myself, to see what information I can learn from others and to help others, even if it’s only “You’re not alone”.”